On Past and Present

Mapping the way
Mapping the way

It was as if my life began the moment she gasped her first breath and it was not; it was the moment my life began anew—my life as a mother. This new life was supposed to be my smooth paved roadway fresh and free from debris—the one I merged back onto after the bumpy detours and construction of the past.  But, fate and the universe have plans of their own.  Instead, as our family drew our first breaths of air together our caravan careened off-road and entered an equally bumpy, detour filled journey with no maps, no GPS, and no intention of ever returning to the well-traveled, smooth-paved roadway the typical travelers sojourn.  

My tumultuous past is visibly mapped out in faint white juts that jaunt across the olive skin of my arms and traverse into deep sinewy canyons; they are detours that innocent little fingers have always known and lovingly traced as they soothed themselves to sleep.  Disconnected from and ashamed of such a burdensome history and its physical manifestations, I hoped to leave it all behind when those innocent beings entered my world.  

The canyons healed long before we drew those breaths together and the map of my past rarely crossed the junket of my mind until the hot rays of the summer sun shed the layers of concealing sleeve above and revealed the delineations below, and deepened the hue of the surrounding skin and divulged my Mediterranean descent.  

Recently the topography was more present; my map was mentioned and questioned by those not as kind and innocent as my tribe.  I felt thrown asunder.  How many noticed and what did they think about it?  Did they think it undermined my ability to navigate the rocky roads of our current journey?  Because, I certainly started to fear that myself.   

I began to have a deep desire to erase the pox-marked skin of my arms, to eradicate the troublesome nature of my past, and pretend that my life began somewhere on my more recent track; but, I could do that no more than I could miraculously heal my daughter’s rare disease, right our off-road travels, and soften our bumpy trail.  Confidence eroded from under me like soil washed from a mud packed path under the stress of a traversing vehicle.  

In the growing shadows of the late evening my son ran his fingers across the deep crevasse vertically demarcated in my inner elbow and my mind traced back into the shadows of my past.  He lovingly soothed himself as he always had on “Mommy’s tickling spot,” and gently stroked as he let the bumps and bruises gained during the travels of his day melt away in my loving embrace.  I held the juxtaposition of past and present.  How very similar and very different the constant crisis, arduous and pain-filled days.  In that moment, as our breathing slowed and synced I also held the resilience, the great love, and the courage.

I realized all the light to match the dark—the yin to the yang—that helped me survive the hard course of my past—all that I learned—prepared me for riding through the chaos of the present.  I breathed with him bolstered by a new confidence.  It mattered not the thoughts of others but the knowledge of my soul.  

The factors of my resilience pulled me from the precipice and aided me along my way in the past, and, because, I exercised them, out of necessity, I know them intimately and impart them intuitively to my children.  I emanate them as our breathing syncs and they trace the pathways of my love; they take from it all the deep devotion, boundless resilience, passion, advocacy, respect, and kindness they need along the way. 

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On Love Through the Extraordinary

Loving Through the Extraordinary
Loving Through the Extraordinary

My eyes met the translucent blue waters that surround his pupils over our lunch of fast-casual Mexi-American and dove in deep.  I found calm and strength in their tides for over ten years no matter how stormy the sea of our lives together.  I longed for more moments where I could catch his gaze again and hold it, just the two of us, even if it was surrounded by the shuffle of feet on tacky soda-stick floors and air heavy laden with the smell of fry-o-lator tortilla chips.

The pace of life for us is like the lunch rush at that fast-casual restaurant.  It is chaotic, noisy, and impossibly straining.  Daily operations are assembly-line style and crisis is ever present.  Not exactly the metaphor that comes to mind when one thinks of love, marriage, children, and family.  Nevertheless, he is mine, I am his, they and this life are ours.

We were young(ish) and dumb(ish), foolish and in love.  We shared late nights dreamily staring at the night sky planning the future we were to spend together–our family, our children.  I stared deep into the oceans of his eyes and promised to love him for better or worse, in sickness and in health, for richer or poorer.  Little did we know what the stars held.

Movements flickered on the screen in the dark of the ultrasound room like stars in the sky when we first heard her diagnosis.  He tried to hold my hand as they said she had tumors in her heart and brain, would likely suffer from epilepsy and autism, and rattled off the litany of other potentially devastating effects of her rare disease.  Rebuffed, he gave me space, because he knew my stubborn independence required it.  I still don’t think he knows how much I needed the gesture; how much I need it every time and how much, no matter how miffed I seem, I appreciate and love him during every crisis.

We negotiated the sale of a house with a baby in the pediatric intensive care unit (PICU) in heart failure, we had the courage to have another after our first child was born with a devastating deletion in her DNA, we navigated therapies, medications, diagnoses, and medical insurance and still do day by day.  We gained gray hairs and the start of wrinkles.  Most importantly, we’ve done it together.

When the stormy blue of his eyes whips violent swirled by the latest crisis the earthen-clay of mine grounds him; and when the clay-colored earth of mine rumbles and shakes threatening to break his calming waters soothe me.  In a life with no astrolabe to chart a path through such horribly fated stars we lead and follow each other where the journey takes us.  Even if that means catching up for a mere 20 minutes over extra-cheesy culturally appropriated cuisine.

 

On Struggle

The Fragile Strength of a Mother's Heart
The Fragile Strength of a Mother’s Heart

Her halting words barely rose above the rumble of the air conditioner.  She read laboriously as her afternoon applied behavior analysis (ABA) therapist guided her steadfastly.  Suddenly she exploded in frustration; her hand shot out like the strike of a threatened snake and hit the table with such force she made herself cry out in pain.  She stood and knocked the chair to the ground screaming, “This is too HARD!  I can’t do THIS!  I can’t read THIS!”

Across the room my heart shattered for the seemingly infinite time.  My chest disintegrated as I remained in a similar steadfast and stoic pose to her behaviorist.  In the life of a parent of an extraordinary child, a child with immense special needs, with a rare disease and its accompanying features, including autism, the heart grows the ability to shatter and mend, shatter and mend, in an endless cycle.  

My heart broke and I wanted to run and scoop up my baby girl and whisper all the sweet nothings that I understand so deeply and intimately about her life and let her tell me all she needed to about how hard it was to read that book, but I knew I couldn’t.  There would be a time for that, but that time was not then as much as it grieved me.  

She moved to the couch still screaming like shrapnel flying out from the center of an explosion.  Her ABA therapist calmly spoke to her and helped her identify what she could do to help soothe herself. An audible breath hummed across her lips as she nuzzled down into the couch and let out a rattling grumble.  She burrowed deeply into a blanket and covered herself in it’s soothing fuzz.  Moments later she emerged from her cocoon ready to face the book again.  

The pieces of my heart rose in my chest and found their matches reconstructing like something out of the Matrix.  I watched her strength in awe, still forced to freeze my facial expression in stoic stillness until she completed her task.  I wondered if this cycle would continue like some amusement ride in perpetual adrenaline-laden motion through all her stages of development and my mothering.  I felt fragile like the glassen shards of my heart. 

A calmness suffused her body and she attempted the remainder of the book.  Still halting and jagged she succeeded and exploded, but, this time, in a smile bursting with pride that shone brighter than the rays of midday sun that peaked through the windows’ curtains. Stoic no more, I scooped her up as my heart swelled with pride and relief.  Until the next time.

I wished more than anything things for her were easier.  Second to that, I wished that there were some way to know if my mothering, and all the therapy, were helping her along in her journeys. For now, I follow her and my heart down the roads love and progress may lead.

On Extraordinary Siblings

On Extraordinary Siblings
Finding Hope Through Love

The medicine spilled down my fingers sticky-sweet and thick somehow reminding me of tar.  It found its way onto every surface with long reaching tendrils and glued itself there.  Dammit! I thought, I don’t want to be doing this, not again, not for the seemingly infinite time in her short life, because the sickly sweet antibiotic with its tar like tendrils stuck to me and weighed me down with complete and utter hopelessness.

My mind jogged back to picking up the medication and the scene we caused in the pharmacy drive thru.  A simple sibling fight had escalated to screaming match until he yelled out in frustration, “I wish she was normal!  I wish I had a normal sister!”

I was stunned into silence as the motion of the pharmacy tech’s hand slowed to a crawl in my mind’s eye on its way to hand me the necessary supply of medications for this round of battle.  There is only so long one can stay shell shocked and survive, so I forced myself into forward momentum, turned around and addressed him with a, “We will talk when we get home,” signed the pad, and went on our way.

At home I got to the business of doling meds, as the hot anger churned acidly in my stomach and fear of not being enough to handle this all shook my hands and spilled the drip down my fingers.  How does one address a sibling with the tar of hopelessness stuck to every fiber of one’s being with its accompanying stench of helplessness following one’s every move?

After dosing sister, I sidled up to him on the couch, “Bud, don’t I wish, every minute of every day things were different too?  Your sister is normal.  She is perfectly meant to be who she is; just as you are you.  We all struggle with something and sometimes that is a big thing and sometimes that is a small thing; for her that struggle is a very, very big thing.  I get mad too and wish she didn’t struggle like she does and it’s ok to wish that but it isn’t ok to say that to her.  If you have those thoughts or feelings you say them to Daddy or me.”

I swallowed hard waiting for this impossible-to-understand topic to land in his six-year-old psyche. Hopelessness is pervasive and deep. It will stick to one’s insides.  He has it stuck to him too.  He is small and in a world impossibly unfair and even more improbable to understand.  We have to make some room for him to share his burden even when we don’t like how it sounds.  

The same burden that can make this mom feel weighed down and consumed with a panic that feels like it will never dislodge.  My heart ached for him and broke with the weight of helplessness and hopelessness.  I knew I had to work harder to illuminate the genuine love and hope for his sister and our family that I hold for him and all to see.  

Because, I know right up beside that hopelessness and helplessness is a reservoir of strength, hope, and resilience.  I find it in her smile, his hug, the way they both burst out laughing in the pharmacy drive-thru as I rolled down their window and told the pharmacist that I had two fighting beasts on display if she cared to view; it is in the juxtaposition.  

Yes, I wish every day that I could remove her struggle, but her striving in the face of adversity is what gives me hope.  I would not change either one of them.  Not one bit.  And that is where he can find hope.  In his mother’s love.  That will carry him through the struggles of having a sister with a life-altering rare genetic disorder.   

I moved closer to the feelings of love, agency, and hope as I scuffed the hair on his head.  He smiled ever so slightly through the sadness.  

We’ll make it through.